By Stacey Moffat
My son Carter and I recently attended our first Breaking the Ice Conference for people who use augmentative and alternative communication (he's holding his voice device in the photo above). This year the conference offered a children's program I thought Carter would enjoy. We attended for the full day so Carter could participate in the children's program and then we'd have lunch together and watch a Town Hall meeting with adult AAC users.
As the day approached I was excited about how great it would be for Carter. He'd have fun and be inspired and motivated by others who use talkers just like him.
But by the end of the conference day, my rose-coloured glasses were a bit tarnished, I think. Carter was eager to attend the children’s program and enjoyed tracing his body and then decorating the craft paper with information about himself (see masterpiece posted behind him above). But if he'd had his way, we would have headed home after that.
Carter was the only person with a talker at the event who walks, and it was a real challenge because he didn't want to sit down. Inbetween activities he kept busy going up and down escalators and was having so much fun that when I told him we were all done and it was time to go back to the event, he had a meltdown.
After we ate, I introduced him to Jess and Emily, two amazing young ladies I met last year when I attended a condensed version of the conference. Carter liked looking at the girls' talkers because they were different from his. He examined their name tags and was thrilled to be able to say their names using his talker. Jessica is programmed into his people page because it's his teacher's name and Emily is programmed into his toy page because it's the name of one of his toy trains.
But these encounters didn't last long.
Carter was determined to find the perfect spot to play with the Lightning McQueen car he takes everywhere. I let him wander while I stayed in my seat and tried to keep an eye on him. A lovely conference organizer noticed my craning neck and offered to walk around with Carter. The two ended up cozied up in a corner reading books while I watched a presentation about AAC mentors put on by Barbara Collier of CDAC and several adult AAC users. Of course I'd already heard about the program and signed up for a mentor!
I've felt a strong pull to the AAC community because Carter hasn't officially been diagnosed with anything other than global developmental delay. That means we've never had a place in any one disability group, like autism, cerebral palsy or Down syndrome. As a result, I think I've been on a mission to embrace the AAC community as "our group."
But it's a diverse group and it's a challenge connecting with members because the opportunities are few and far between. I guess it's natural that when I hear about something, I jump at it. But sometimes I lose sight of what it is I'm looking for, and whether it's suitable for Carter.
In reflecting on our experience at Breaking the Ice, I realize that while I'm driven to take part in all things "AAC," my nine-year-old son, like most young boys, isn't.
When we finally sat down for the Town Hall meeting, Carter pointed to the door and signed "car" over and over again. Thankfully, a mom who I’d met earlier and whose son was in the children’s program with Carter, came along with her iPad. She put on a TV program for Carter to watch (without sound) and that kept him somewhat entertained.
Once things got underway with the meeting, I hoped Carter might listen to the AAC users who answered questions (they'd been given the questions in advance so they could prepare). The questions included "What inspires you?" and "What keeps you motivated when conversations move too fast and it becomes difficult to add your own comments?"
Several wonderful responses were shared. Comments like Jess's brought tears to my eyes: "I am inspired by my mom. She has always been there for me. She is an incredibly strong, outgoing individual who never gives up on anyone. Even if she's going through a rough time, her courage and strong will inspires me."
In hindsight, I can't blame Carter for not taking an interest in what the adults had to say. I'm pleased we were able to attend a small portion of the meeting, but I recognize that the meeting was much more interesting for me than it was for Carter. What nine-year-old boy wants to sit through a meeting of adults?
Perhaps the best is yet to come from our experience at Breaking the Ice, and that's the opportunity to provide feedback to the conference committee.
I can think of lots of activities that Carter and other children who use AAC might find motivating for future sessions (beyond riding the escalator!). Maybe they could have a Town Hall meeting of their own. By sharing my input, future conferences can be shaped in a manner that will draw more young families like ours, resulting in more participation from children.
I'll continue to get involved with AAC events because I enjoy connecting with others in the community and I want to stay educated. I'm glad that I finally have a community to embrace. But from here on in I'll think more carefully about Carter's involvement. Instead of feeling the need to take part in an event just because he's an AAC user, I'll first consider what Carter might get from the experience.
Will he truly enjoy himself, or would he be happier hanging out at home?
Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada on the Executive Committee. She blogs about raising a child who communicates differently at More than Words.